Families of children needing extremely high levels of support, because of complex and multiple disabilities spoke about the drastic actions they have been forced to take when the disability service "system" has been unable to support them to raise the child at home.
Most families with sons and daughters who have Down syndrome do find the supports and services they need, and are able to develop skills and resilience sufficient to meet the child's needs relatively comfortably within their own families. But some children and adults with Down syndrome do have more complex needs, and can have multiple disabilities and/or health complications that push their families' limits of endurance beyond reason, similarly to those families' whose stories have been told in the Inquiry.
The NSW Department of Ageing, Disability and Home Care policy is that all children under 12 should be raised in a family setting, but it apparently still has no workable solution in place for situations when that is not possible. One family's story has been highlighted in the media, and was accepted by the Inquiry as a case study.
A parent-observer at the inquiry on Friday reports that " ....senior DADHC officers said there were a number of models of accommodation and yet could not name any other than saying every effort was made for children under 12 for the child to remain in the family home with in-home support. When pressed by the Commissioner and his assistant as to what was the alternative if it was impossible or inappropriate for the child with disability to remain in the family home, or with a foster family, the DADHC officers really had no satisfactory answer"
Media reports on the Inquiry's disability hearings:
How policy forced a family to desert their child (SMH 10/11/08)
Disabled Kids not getting proper care (SMH 11/04/08)Lack of services for disabled children tearing families apart (SMH 11/04/08)
Parents 'forced to abandon disabled children' (ABC News, 11/04/08)
Two heart-felt letters to the editor of the Sydney Morning Herald, from family members responding to the reports are published under the heading The ability to care depends on support, in today's edition.
A transcript of the hearings on disability (11/4/08) will be available on the website of the Commission of Inquiry's website by Monday 14/04/2008 or Tuesday 15/4/08
The Department of Community Services submission on Health and Disability is linked under 10/04/2008, the NSW Ombudsman Report 2004 - DADHC - The need to improve services for Children, Young People and their Families (which is critical of DADHC's inability to deliver the services its policy requires) is posted under 7th April 2008 on the same page.